Fritillaries
Member
Ok, another long one for you; So far I have done EMG and NCS tests twice, my first one focused on right side of body where the twitches in my hand started. My second one focused on left leg and foot where my twitches seem to be most prevalent now. My EMG/NCS doctor sees no upper or lower nerve cell diesease, he said it doesn't mean there definitely isn't something, but he didn't detect it if there was. My Neurologist believes the EMG/NCS test for what it is, he says no findings on these tests, and no clinical observation of ALS symptoms, leads him to the conclusion this is not ALS. During one of my exams, he asked me if my legs jump while I sleep, and I said yes, indeed they do as my wife told me it wakes her up. (I am certain that I always had RLS because if I take an Antihistamine, my legs exhibit the most uncomfortable and agonizing thing - the feeling they just have to move) So while RLS isn't the issue bringing me to the Neurologist, we decided to treat my RLS with Requip to see if it helps with my BFS symtoms. It didn't and my Neurologist conclusion is that he doesn't know what this is, he says they are benign fascilations, but he doesn't use the term "Benign Fascilation Syndrome" specifically. He also has trouble with understanding what I mean by buzzing and popcorn sensations, these symptoms are apparently something he hasn't ever heard a patient describe before which might be a good thing actually. My next neurologist appointment is in 6 months, you can see by this long schedule that he is not worried this is ALS. My primary care physician seems completely uninterested in my symptoms, he doesn't seem to want to talk about it, but he is happy to refer me to any specialists that I request. As for my own anxiety, I am a very low key and am not a high anxiety person, and have never been treated for any anxiety related issues. In the first few months of this thing, you could probably say that I had mild anxiety because I did lose a number of nights sleep over it. ....Now, one more thing about me that brought me into this realm; my mom died of ALS at the age of 65 in 1995. I am now 45, so when I started reading about twitching, I went down the path that many BFS'sers do, I pretty much got really nervous about it and read way too much into twitching ignoring weakness altogether. My moms symptoms didn't start with twitching, they started with a fall and a sudden and complete immobility of her left leg after the fall. Any noticable twitching occured only in each limb after they one by one succombed to immobility. She never had a single day where her symptoms seemed to be less than the day before, it was very progressive and very quick. I sat in every neurologicl exam my mom had and she never even uttered the word twitch to me or anyone - ever. Twitching just wasn't a symptom she was aware of, but I personally saw the twitching in her limbs myself but only after the limb was weakened. ---Now, even with this disparity between her and my symptoms, I still worry; but not to the point where I lose sleep any more. Other things I've done, I had a Lyme diesease test (western blot) performed, it was negative. I have tried all kinds of dietary changes, supplements, etc. and absolutely nothing changes the symptoms. So in conclusion I believe BFS is a real illness, perhaps not ALS, perhaps it's benign. I am thinking it might be autoimune or psychological because in me, my symptoms seem to reduce if I am under an immediately stressful situation such as at the doctors office, a meeting, or something unexpected arises. This leads me to believe that there might be a cortisol stress hormone suppression thing going on here that might be key to the basis of this thing. Since automimunity is something that can be measured diagnostically and may be influenced psychologically, I'm starting with an automimune doctor visit first. I hate to get in the self diagnosis thing, but you have to when your doctors run out of ideas.